We Heart a Great Fit | Nordstrom and the Young Survival Coalition

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It’s no surprise to most of you that I’m quite a fan of Nordstrom.  Their customer service, for one, is top notch, and that’s a big deal to me.  I’ll never forget the time that the gentleman in the shoe section was tracking down a pair of shoes for me at another store since he didn’t have my size.  It was taking a long time, so Sally and I wandered over to the lingerie section and were shopping there when he finally got it all taken care of.  He came over and found me and placed my order right there, at the “unmentionables counter.” (bonus points if you can name the movie reference for that one.)

Needless to say, after my first trip to the unmentionables counter at Nordstrom, I was a convert, never to return to the land of Victoria and her secret.  The women at Nordstrom know what they’re doing, and they will make sure to get you into a bra that fits you.  This weekend, they are partnering with the Young Survival Coalition for a fitting event, and will donate a portion of the sale of certain brands (I can’t remember now, but there are several– it’s not like you have to buy that one outrageously pink bra if you want to be part of the event!) to the Young Survival Coalition, which addresses the unique needs of women who are diagnosed with breast cancer before the age of 35.  (I was barely 35 at diagnosis, but apparently, I make the cut!)

I’m pleased to be a part of the campaign for a bit on Friday morning, and will be at the Nordstrom in Tyson’s Corner.  I’ll talk to the staff there and probably stick around and answer any questions that they or any shoppers might have.  I can see where having a pink-hued bra fitting event for breast cancer might seem like just another Pinkwashing kind of thing.  But, I have learned that the “pink” opens some doors, and so it would be silly of me not to seize that teachable moment to encourage women to make smart health choices and have a better understanding of breast cancer.

So for the details: the event runs this Friday and Saturday, October 24-25.  I’ll be at the Tyson’s Corner Nordstrom starting at 10am.  Not sure how long I’ll be there, if you might stop by, let me know!

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Metastatic Breast Cancer Awareness Day

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You probably all know that I’m a little weary of breast cancer awareness in general.  We are past the days of Betty Ford when the words “breast cancer” were spoken only in a whisper.  People know what breast cancer is. I think a lot of people know that because of early detection and improved treatment regimens, the outlook for women facing breast cancer is no where as grim as it once was.  It turns out, though, that all the pink and all the survivors have perhaps done the breast cancer community a bit of a disservice.  When you know far more women living after breast cancer than those whose lives have been claimed by it, it’s easy to think that it’s not such a big deal.  It’s easy to think it’s not so deadly.

And yet, there are nearly 150,000 women (and a few men, too) living right now with metastatic breast cancer.  They are in the never ending cycle of scan, treat, repeat.  That’s right, they will be undergoing breast cancer treatment for the rest of their lives. Lives that will likely be cut tragically short by breast cancer.  While only 6-10% of women present with advanced (metastatic) breast cancer, nearly 30% will likely have a recurrence, putting them into that dreaded metastatic category.  Treatment advances since the 1970s have increased the median survival time for a woman with a metastatic breast cancer diagnosis to three years, which, while not great, is at least trending in the right direction.

There are a few groups that are focused on advocating the needs and research agenda of metastatic breast cancer patients.  Monday, October 13, was Metastatic Breast Cancer Awareness Day.  The Metastatic Breast Cancer Alliance, made up of twenty-nine breast cancer organizations, released a comprehensive report on the landscape of metastatic breast cancer, focusing on issues like research allocation, patient quality of life, support for metastatic patients, proper epidemiology (currently, data are not collected when a patient has a recurrence, so it is unknown the exact number of patients living with metastatic breast cancer), and public awareness about metastatic breast cancer.  (It’s a pretty heavy read, but the Executive Summary is a little more manageable.)

Instead of reiterating all that is in their summary, I thought I’d share with you a few things I learned this week.  I came across a tweet from Pfizer which had the staggering results of a survey they conducted:

pfizerI was shocked to see that 72% of people think that advanced breast cancer (by definition, that’s stage IV or metastatic disease) could be cured, and that half of those surveyed thought that it was basically a woman’s own fault if she ended up with metastatic disease. For the record, once breast cancer is considered advanced, it’s not curable.  Current treatments aim to control quality of life issues, and are considered successful if the cancer doesn’t get any worse. Maintenance without progression is the goal.  While many women can live years in this “maintenance without progression” zone, they will likely die as a result of their metastatic breast cancer.  In addition, those who progress to stage IV disease, sometimes within a few months of the cessation of treatment, sometimes more than ten years later, are not responsible for their progression. Many of that 30% had tumors that were caught early and treated aggressively.  Figuring out who will progress and why is a huge deal– a very present research need that some are beginning to address.

The other thing that I learned probably has a little something to do with those statistics.  Hopping on and off twitter on Monday, I saw a lot coming from the metastatic community.  Tweets, blog posts, chats.  My overwhelming impression was that many of these ladies feel isolated and marginalized by all the “pinkness” of October. They feel like they don’t fit in with all the messages of hope, knowing that they face the reality they will not “conquer” their disease.  They have an understandable urgency for mets-focused research, and many find awareness for awareness’ sake just plain offensive.  They’re not so much interested in all those #SaveSecondBase, #TouchYourTaTas, or #NoBraDay campaigns. They want people to understand that metastatic breast cancer claims nearly 40,000 lives every year, and more research money needs to find a way to stop it.

I was touched by the passion of these women to educate and advocate, knowing that their lives will be cut short by breast cancer.  Again, this seems like a time when a little selfishness is in order.  Yet they argue with passion for research money that will doubtfully be able to save their lives.  They write, chat, and speak in public in between chemo appointments or based on the schedule of when they’ll be feeling their “best.” Surely they deserve our utmost respect during a month that many women who’ve been through breast cancer, either in active treatment or with no evidence of disease, find so very difficult.

 Images via MBCN and Pfizer

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The DC Ladies Interview

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Do you read the DC Ladies? It’s a fun lifestyle blog for women, by women, in the DC area.  I love their tagline: the most fabulous women in the most powerful city. So I feel just a little fabulous today to be featured on their site.  It’s my first online interview, and I think they did a great job with it.  Shelley’s questions pushed me to think about things in a different way, so even faithful readers here will probably learn something new, and it is such a privilege to share my story with a new group of readers.  Check it out, and enjoy your holiday Monday!

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Breast Cancer Awareness at the Pentagon | Recap #2

After the morning’s fun un-run, I headed to the Pentagon Athletic Center with a big crew from the clinic to shower and get ready to face the day.  I just love the camaraderie of a bunch of women getting ready together.  There are no pretenses– everyone can complain about their hair as they blow it out, there’s always someone with an eyebrow pencil if you’ve forgotten yours…  After a quick breakfast and a little break, we headed over to the Pentagon Conference Center where I gave my first talk of the day.  Of course, getting my talk from the laptop (which is maybe the oldest laptop I’ve ever seen!) to the screen was a bit of a challenge.  I think it took five of us to figure it out, and the conference center tech guy basically gave up and left us to our own devices before we figured it out.  Somehow it wouldn’t be a power point presentation if there wasn’t a problem with the projector.  (Those who know me well might know that I have a bit of a thing with fonts, so of course they were carefully chosen.  And of course the super old computer didn’t have the same font set, so I ended up with a few things in a rather pirate-y font.  Awesome. I’m sure I didn’t obsess over that and mention it in my talk at least four or five times.)  Once we got it going and I got over the pirate font, it went well.  The talk was open to anyone at the Pentagon, and I was privileged to have the senior staff from the clinic and the head of the Breast Care Center at Fort Belvoir and her chief nurse in the audience, too.  It was a diverse audience, but I think I managed to keep everyone engaged, and there was a great discussion afterwards.

DSC_0005In the break before heading out to the courtyard, I had lunch with the ladies from the Breast Care Center at Fort Belvoir. It was so interesting to share perspectives on patient care, and it was a unique dynamic– since she wasn’t my breast surgeon, I enjoyed being able to talk to Dr. Williams as more of a colleague than in the normal doctor/patient relationship.

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The courtyard event was fun, it was filled with people in pink who were eager to share their own stories.  It was a privilege to speak with so many men and women.

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And then I see this picture.  That’s me, standing on the stage in the courtyard of the Pentagon, being introduced to the crowd by the director of the clinic.  Craziness. I don’t get nervous, and feel like I’m taking it all in stride, but then sometimes I just realize– this is a big deal!

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I gave a quick talk, a little about me and a little about how to reduce your risk of breast cancer where you can and the importance of regular screenings before encouraging everyone to join me for a walk or head out on the three mile run that we skipped that morning.

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We encouraged everyone to walk for twenty minutes.  You know, for their health.  We’ll just not talk about the fact that each lap went through the designated smoking area.  Little victories, you know? ;)

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Oh, and did I forget to mention that I got a major award? OK, that might be overselling it a tad, but I did get a lovely framed certificate lauding my contribution the the Pentagon’s Second Annual Breast Cancer Awareness Campaign and a commander’s coin from COL Pina. Very cool.  If I ever get a real job with a real office, you can be sure that bad boy is going on the wall!

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But really the best part of the day? I got to know some great people.  The clinic staff were such lovely hosts and made me feel like a VIP and part of the crew at the same time.  I spoke with several women who either were going through treatment for breast cancer or who had faced it in their past.  We traded stories and bonded in a way that’s becoming so familiar to me.  Karen tells me that she’s gotten great feedback since the event, and one of the women we talked to has even already stopped by the Fit to Win program at the clinic to start on a more proactive survivorship wellness plan.

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It was such a privilege to get to be a part of a breast cancer awareness campaign that I truly felt made a difference.  There was pink, yes, but I really feel like there was a conscious effort to embrace the teachable moment that the pink provided.  I was able to share some proactive steps a woman can take to reduce her risk of breast cancer, and I was able to incorporate some of the recent data that mammograms are catching cancers earlier.  But I was also able to use my time to remind everyone that there are no guarantees, and despite all the talk of risk reduction, early detection, and even my smile and healthy appearance, nearly 40,000 women will die of breast cancer this year. With so many healthy survivors, it can be easy to gloss over the fact that breast cancer is a serious disease. And while October, in all its pink glory, can get a bad reputation for ignoring the hard parts of breast cancer– the suffering through treatment, what it’s like to live with metastatic disease, the lives it claims– I felt like my October day at the Pentagon was well spent.

Thanks to Natalie at the clinic for the images of the day’s events.
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Cancer Vixen | Breast Cancer Book Review

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When I was diagnosed with breast cancer, several well meaning friends and family members gave me breast cancer books.  They were such thoughtful gifts, and I really did appreciate each one.  They were mostly the kind of books that had soft images of flowers on the front, they were probably really touching, inspirational, and encouraging.  I’m not sure because I only read (most of) one of them.  Somehow they didn’t scream “entertainment,” and that’s a pretty important component of any book that’s going to hold my attention long enough to finish it.

The day I had my head shaved, I first met the woman I consider my “cancer mentor.” She had finished treatment about six months before, and had tips, advice, and could commiserate over pretty much anything I wanted to discuss.  She has a great sense of humor, so when she suggested a book, I was all in.  Cancer Vixen didn’t disappoint.  It’s hilarious, a little irreverent, and so very true.  Any time a book has a magnification of little green cancer cells giving you the finger and mentions several new MAC lipstick shades I need to try, I think it’s a win. There were so many things to which I could relate.  It’s like it’s the book I would have written.  If I were an artist.  A funny artist.  A funny artist living a fabulous life in New York City.

I didn’t really want to read anything insightful, heartfelt, or inspiring.  I wanted to commiserate with a funny friend who knew just what I was going through.  Plus, anytime I can think of myself as some sort of super hero, and a vixen to boot, well, that’s a good thing.

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Lessons Learned at North Parking | Breast Cancer Awareness at the Pentagon

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Early morning PT, that’s the Pentagon behind the group to the left.

When I got a call the last week in August from my friend, Karen, she had just started as Nurse Educator with the Fit to Win program at the Pentagon health clinic, and she had just over a month to help put together a breast cancer awareness event.  It has been a work in progress for most of the month, but I consider myself an easy going person, so I’m fine to go with the flow if the details change.  (foreshadowing alert!) The whole day was a great experience, but I’m waiting on pictures from Natalie, the day’s official photographer, so we’ll start the recaps with the early morning fitness routine, since I managed to grab a quick photo of that.

The general premise of the day had always been perfect for me.  I would join the clinic staff for their monthly RUN, head inside the Pentagon Athletic Center to shower and put on some LIPSTICK, and then give a couple of talks about breast cancer and CHEMO.  Run, lipstick, chemo.  Like the day was made for me.

After agreeing enthusiastically, I got a little nervous.  I was intimidated to run with all those military types– I run, but I’m not fast. Karen reassured me, it’s just a three mile run to the Lincoln Memorial and back, and the first half they run all together at a 12 minute pace. I can do that.  I was ready.

Imagine my surprise (shock, horror?) when the gentleman in charge of the o-dark thirty festivities, whose arms and legs resembled tree trunks, announced that we would not be running. Instead we would do something “fun.” Twenty minutes of army PT followed by fun relays. Gulp. I was a good sport, managed not to totally humiliate myself, and was, quite frankly, thankful for having had a mastectomy, which gave me an easy out from all the push ups.  Man, they do a LOT of push ups.  I decided to do sit ups instead to show that I was a “team player,” but did opt out of the bear crawl relay with a few others recovering from recent surgeries.  It was fun, and I even learned a few things:

  • They do a LOT of push ups.
  • Sit ups on an asphalt parking lot hurt.  If you position your spine along the parking space stripe, it’s not quite as uncomfortable.
  • Running short distance relays where you turn and go back (suicide style, at least that’s what we called it in middle school) works out a totally different group of muscles than “normal” running or body pump classes.
  • Doing upwards of 200 sit ups on an asphalt parking lot (even on the stripes) will leave you with bruises along your spine. You may wonder if you should blog this, not wanting any of the push uppers to make fun of you later. Secretly, though, you may consider your bruised spine a badge of honor.
  • Did I mention they do a LOT of push ups?
  • Being a VIP has its privileges– when they picked teams for the relays, I got picked first!
  • Most sets consist of ten of each exercise, and as they count off, after nine comes not ten, but one-zero.
  • Sometimes they do more than “one-zero,” in which case everyone (except the random civilian) knows to stop because of the tone of Mr. Tree Trunk’s voice. Said random civilian gets an extra workout by doing two extra jumping jacks before stopping like everyone else.

Intimidating as it seemed, I know that they were taking it easy on me. (I was a lot more sore from the body pump class full of ladies that I took earlier in the week!)  But they didn’t act like they were taking it easy on me, they let me feel like I was totally hanging with them, and they had great team spirit– lots of cheering on those relays for everyone. They made me feel completely welcome and it was a pleasure spending the day with them. And stay tuned, there are more stories to tell!

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Early Morning Reflections

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You know when you’re at a shopping mall and you’re looking for the directory and all you can find is those signs with the ever-changing ads? I guess after the kids thought Daddy worked at a mall the first time we visited him there, it shouldn’t surprise me that the Pentagon has those same signs.  But this week, my face will float by that screen for ten seconds at a time!  So cool.

Yesterday I got to meet a lot of people at the clinic, and had a nice time speaking to the nurses after a yummy lunch.  I even got to chat with one woman nearing the end of her reconstruction process, and as always, it was like we were old friends, bonding over our common experiences.

As I sit waiting to form up for this morning’s run, I am in awe of the fact that I get to do this! I’m sure some people are used to this type of thing, but the idea of being a “VIP” with my face plastering the walls of such a high profile building kind of makes me giggle. I definitely feel like this is another instance of God getting everything ready before I knew what was even going on.

But that’s probably enough reflection for now. I’m starting to see people show up, I should probably stretch so I don’t injure myself somewhere between the Pentagon and the Lincoln Memorial. At least running with the Pentagon clinic staff, I know I’ll be in good hands even if I do!

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Red vs. Pink | Baseball and Breast Cancer Awareness

Pentagon breast cancer awareness Jamie HollowayAh, October. Growing up in St. Louis, the end of September was filled talk of magic numbers and the upcoming pennant race.  To support our beloved Cardinals, the streets were a sea of red.  October was all about baseball and red.

I did don my Cardinals jersey this afternoon as the redbirds clinched the pennant, but the lead up to October has been a bit different this year.  Instead of baseball and all things red, I’ve been reading all my brain can handle on breast cancer and I actually bought a pink dress.

I’m starting off October with a bang– four events in two days!  I’m so honored to be working with the DiLorenzo TRICARE Health Clinic at the Pentagon for their Breast Cancer Awareness Campaign. The overarching goal of each of the events is to encourage women to maintain a healthy lifestyle to reduce their risk of breast cancer and to remind women that early detection through screening saves lives.  This Friday is my big day, which starts at 0530 with a run with the military staff at the clinic.  For you non-military types, 0530 corresponds roughly to oh-dark thirty, which is to say, 5:30.  AM.  And I will likely be the only civilian. No pressure there. After a quick shower, I’ll throw on my new pink dress and give a talk that’s open to anyone at the Pentagon, sharing a little about myself and some friendly tips for patients, survivors, caregivers, and providers.  I’ll have another quick breather before the big event in the courtyard of the Pentagon, where I’ll reinforce the themes of the day and kick off a walk around the courtyard.  Representatives from the Breast Health Centers from Walter Reed and Ft. Belvoir will be there to answer any questions and encourage women to set up screening appointments.  That will wrap up my day, and while I’m sure I’ll want one desperately, I’ll bet there won’t be time for a nap before I have to head to the bus stop to pick up the kiddos.  I’ll also be heading over a couple of other times to give the nursing staff a patient’s perspective and to share some of the recent news from breast cancer research and clinical studies with the clinic’s doctors.

I was definitely a bit nervous when we started talking about all that would be going on this week.  But then I realized this is exactly the kind of thing that I want to be doing.  I’ll be bridging a gap between scientists, patients, and physicians. It’s a lot all at once, but I feel like this is something that God has really worked out for me.  It’s all right here, I just need to prepare and go for it.  I’m ready.  Three out of four talks are finished, I’ve been faithfully running, and I am now the owner not only of a pink dress, but also a pink running shirt.  Thankfully, the Cardinals are once again vying for a World Series spot, so I’ll get to rock my red, but this year, there will be a healthy dose of pink thrown in there, too.

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My Ghost Boobs | Phantom Pain after Mastectomy

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So it turns out that it’s hard to find a picture online of a ghost with boobs.  Which is probably good.   I probably don’t need to remind you that I am a scientist and a writer, not so much an artist. I just felt like this needed an illustration, and this was the best I could come up with.  Of course, I’m not really talking about a ghost with boobs, I’m talking about phantom pain and sensations after my mastectomy.  My “ghost boobs.”

Most people are familiar with the concept of phantom pain after an amputation.  The amputee will feel pain in the limb that is no longer there.  It’s a pretty cruel trick that your brain plays, all those screwed up nerves that don’t go anywhere anymore just don’t know what to do, and it’s hard for your brain to keep up.  I would never compare myself to an amputee, my life is certainly not affected in the way that it would be if I’d lost an arm or a leg.  But I did lose a body part, it’s just that my prosthesis is cleverly hidden under my own skin, and curious kids in the grocery store won’t stare or ask me questions that embarrass their mothers.

So back to the phantom pain part.  As I’ve said, not only am I missing a good amount of tissue after my surgery, all my nerve endings are screwed up.  The nerves go all the way out to the skin– that’s how you feel touch.  In a mastectomy, the surgeon works as closely to the skin as possible, removing all the breast tissue and even some of the subcutaneous (fancy science word for just under the skin) fat.  So while it’s possible the the nerve endings are still there, the nerve part that goes through the breast to connect them with the brain is gone.  (That’s why the tattooing didn’t hurt much at all.)  It’s not a frequent thing, and it’s more often an itch that I can’t scratch than actual pain, but the phantom sensations are really irritating.  I don’t know if I’m actually feeling something real but can’t feel the scratching that usually helps an itch, or if there’s really nothing there to alleviate.  And any time it could be classified as pain, I’m pretty sure it’s not real– it feels like it’s coming from some place right in the middle of all my silicone.  I know there’s not much I can do about it, so I’ve just taken to saying that my ghost boob itches and leave it at that.  It turns out, I’m not the only one who’s dealt with this, lots of other breast cancer ladies I’ve met say the same thing.  What a relief, there’s nothing wrong with me, physically or mentally.  At least as far as my ghost boobs are concerned.

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Cancer Shaming

I’m sure lots of you have heard of the internet sensations of dog shaming and cat shaming, and an eloquently written piece on XOjane recently took on fat shaming.  In this post, the author contends with the belief that all overweight people choose obesity through their diet and activity choices.  Specifically, she points out times where “well meaning advice” was, in essence, blaming her for her weight.  Perhaps she should take the butter out of her grocery cart and replace it with a lower fat alternative; “good for her” for working out at the gym.

I know no one would ever, upon hearing I had cancer, tell me that it was my fault. Yet, a piece in the Guardian made very clear the cancer shaming that I’ve been picking up on lately.  It seems every week something new is “associated” with an “increased risk” of breast cancer. Those quotes are there on purpose– so many of these associations end up being little more than a flashy headline.

I love how we all “know” things that help fight cancer.  Like antioxidants and green tea, right?  I had a friend, who, after being diagnosed with breast cancer, received a big bag of blueberries every week from a well meaning woman at church. I know it was well intended, and thankfully, my friend received them with the appropriate grace. (Who wouldn’t want a bag of forty dollars’ worth of blueberries ever week? Wait! I bet they were organic.  At least $60!)

Sure, it’s good to be healthy. There are plenty of reasons to maintain a healthy weight, regardless of the impact on breast cancer risk.  But do I really think that if my friend had eaten that many blueberries her whole life, she wouldn’t have gotten cancer? Um, no.  And to the friend who made herself and her family eat broccoli every week even though they all hated it because she heard it would prevent the breast cancer that took her mother’s life? I love broccoli.  Eat it all the time.  Got cancer anyway. And if those blueberries could have cured my friend’s cancer, I’m kind of betting that the doctors would be shoving them down our throats. (Or big pharma would be busy synthesizing the critical compounds and pumping them in our veins.)

I know the media just reports the studies that get published and will draw viewers.  But it seems irresponsible to suggest that a woman is at fault for her own breast cancer diagnosis. The thing is, with breast cancer, no one has been able to pinpoint a real cause.  Of course, there is a small subset of women who, like Angelina Jolie, carry a mutated form of the BRCA gene, and the cause of their cancer is clear.  That leaves the other 95% of us wondering if we did something wrong.

Because I’m doing an awareness event with a wellness clinic, I’ve been digging in to the wellness aspect lately.  Maintaining a healthy weight, limiting alcohol intake (the lower the better), and not smoking all reduce a woman’s risk of breast cancer.  But if you start out with a one in eight chance of developing breast cancer and manage to cut your risk in half, that’s still a one in sixteen chance.  Your chance is smaller, but there’s still a chance.  Mammograms have decreased a woman’s chance of dying from breast cancer by catching a tumor earlier, but they haven’t eliminated the chance of dying.  In fact, 20-30% of breast tumors, including some of those “caught early” by mammograms, progress to advanced disease.  Nearly 40,000 women will die of breast cancer this year.

It’s not a woman’s fault that she got breast cancer, and it certainly isn’t her fault that she’s dying from it.  I’m sure not many people suggest that so boldly.  Yet many women are so desperately searching for their own “why,” and feel blamed when they hear the latest study or are forced to answer well meaning questions from others wondering the same thing.

As I think about the wellness presentation that I’ll make in a couple of weeks, I find myself walking a fine line.  We do need to take action in our own lives.  Eat healthy, drink less, move more, and get screened. I think that is a very important message.  Sadly, there are no guarantees. It seems so unfair.  Even if you do everything right, you can still end up with breast cancer. Found early, treated aggressively, a woman can still die of breast cancer. Shaming others and blaming ourselves (intentionally or otherwise) helps no one.

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